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I've never heard of Primary Lateral Sclerosis. Like RAB I read the Mayo Clinic info. This sounds like something where the symptoms vary considerably from person to person. I hope that your doctors are wrong again about the diagnosis and, if not, that your symptoms don't become severe. I am truly sorry that you are having to deal with this at all. It completely sucks.

I wondered where you were and suspected it had something to do with the news you previously told us. As if it could be, this seems worse. Matty, sorry hardly expresses how I feel about it... Bastardly ways or not, no one deserves this crap.

I don't have any experience with PLS, nor do I likely have any medical answer for you. If I did, I'd be a famous researcher instead of a two-bit programmer. But I can keep you in my thoughts and send lots of love out to you. I hate that your doctors don't want to discuss this with you. Fire the bastards.

Hugs,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Before it gets to the pump stage, there is much you can do, including simpler (oral) early treatment, so insist on a neurology referral << maybe you done this >> and pester your docs to talk about it, if they don't know shit (which is quite likely) there must be someone in the kangaroo eats rabbit continent who does.

The tests and especially the interpretation of the tests to separate PLS from other similar things are complex and need expertise. As does the management. I personally would not be settled on the diagnosis yet, even if broadly speaking PLS is in the ball park. For there is no definitive test, it's an expert guessing game. Get the best you can get from the bow ties.

Your HIV doc needs to talk about it cos HIV can do this and look similar, and the solution (perhaps) may be, erm, AZT (unfortunately). But I do not hold out a short plank off a ship of hope for you to walk. The docs need to do the medicine.

I know a few top-notch neurology folks who have spent a whole lot of years focusing on various common and uncommon neurologic manifestations of HIV: Jennifer Lyons at Massachusetts General Hospital in Boston and David Simpson at Mt. Sinai in New York. This is not to say that PLS diagnosis -- and I'd be inclined to agree with Matt; additional testing and opinions are probably a good idea -- is at all related to HIV, but if you're not coming across anyone able to at least explore a possible HIV connection (and thus, potentially, exploring some way to explore the motor neuron decline), I'd be happy to help connect you.

Oh Damned One -- this is not good news. Much wise advice has been dispensed. When you wake up from your rest, perhaps it would be good to consider Tim's offer of help. Doctor's "practice" medicine because our bodies can be a bit bitchy and seem to point in many directions. Always a good idea to discuss things with a number of educated minds.

I, too, have missed your posts of late and was concerned it spelled trouble.You will be in my thoughts.

Since you did not share this in a more private forum, I am forced to reveal feelings and emotions here - something I don't do very often anymore, since they are often utilized to further distance me from this place.

But God Damnit.

What I know of you, worries me that you would even make an offhand comment about necking yourself.

Oh listen, I totally get it (stop a little short of "support" it) when a person's quality of life diminishes beyond a reasonable capacity. And of course, that's about as wide a latitude as the breadth of the internet.

I also know that your physical being, that vessel in which you dwell, does not have the support and help that you might need in times to come. Family oddity, societal craziness, that stubborn Aussie independence, and yes, your prickly personality might all come into play here.

But surely you don't need ME to tell YOU how valuable you are.

You rescued me over and over, here and elsewhere. Thanks to you, I have gotten myself evaluated and have come to terms with being, well, brain damaged (or brain enhanced, depending) thanks to neuro evaluation YOU recommended. Thanks to you, I have managed my meds and my illness and my despairs to a level I would not have imagined otherwise. And thanks to your patience and understanding, I have been able to be a person in this world, with some sense of purpose, long after my usefulness should have ended.

In short, Matty, I owe my life to you.

I would never beg you to stay around in a broken body with no help, no hope. That to me would be torture.

But I sincerely hope you exhaust every other avenue available to your superior intellect before you did so.

You are one of the smartest people I know. And one of the kindest and most generous people I have ever met. And frankly. people who disagree do not deserve to drink the water that arises from the piss you place into the ground, filtered by earth,. raised into clouds, and cast upon our soil in rain.

I do not know what I would do without you.

I thought the same about my dad. He has been gone ten years. And I still find myself asking that question. And that question about Dear Dear Kate, Daddy Tim, and all those who SHOULD NOT BE GONE.

But wishing people here is not the same as wishing people pain.

My selfishness notwithstanding, I want you to find the path that makes you whole and happy. The one that transcends misery and entrapment, the one that creates your true and whole self. I might not agree with that path ( like it's my vote, ever) but I support and respect your direction.

I want you to find a way to fight this, to place your esteemed self above it. I want to live in a world where Matty, piss and vinegar intact, rules his world. My wants, my wishes, I throw out every other day with the ferret litter.

You have been a rock to me. To every incarnation of me that in the multiverse who has had the fortune to encounter you. Your opinion and counsel, half a planet away, has often meant more than every doctor and specialist here in Atlanta.

You know this.

I honestly know nothing about your malady. I have tried to research it, but beyond HIV transmission theory and treatment, my brain cells are pretty much trapped in an infinite loop pf causality. I've surrendered to the flow, and am happier for it, for the most part. Except when I wish to all Hells that I knew more than I did, which is now. About this.

As cheerleading messages go, I think this falls rather short. Captain Carl would have had a much better and more succinct way of saying it. Daddy Tim would have browbeat it to a single sentence. Darling Kate would have thrown her heart into the ring, and made you her defender and champion. All I have is this, this awkward stupid prose.

I love you, and I know what it took for you to post this here. Which is why I post this here, myself.

I feel I need you to know so many things. But I also feel you know them already.

You have saved so many lives, many of which remain clueless and ungrateful. But your light, your lighthouse, shines so brightly that it's little surprise it consumes the body in which it resides. I would want it to be forever, as if there were such a thing.

But I hope you will be selfish and think of your health, your happiness, and your own journey first. Please let us know what we can do. What we can offer. And please know that some of us get it.

Let us inspire you, if we can, if we have that capacity. You deserve so much more than this fucking world has bestowed. There are, as Stephen King put it, other worlds than this.

rant/rage over.

Jonathan

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am so sad to hear you’re going through this. I wondered on several occasions about what might have caused your long spell of absence.

As you might expect, I cannot provide any meaningful assistance as my knowledge on the subject is confined to Google searches – so all I will say (and I mean it) is that, like a lot of your friends here, I miss you a great deal. I sincerely hope, wish and pray (I can hear you rolling your eyes at that word ) that you get some relief and start to feel better real soon.

I haven’t known you as long or as intimately as the others but from the moment I joined the forums I could tell there was a rare-shining gem that lay at the core of your devilish exterior. You were most kind and helpful to me when I was diagnosed and that is something I will always be indebted for and will never ever forget.

Big Hug. You’re in my thoughts.

PS- The quote in my signature line appears to be fitting to your circumstance.

"Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing." -Voltaire

Matty- You've made me smile from a far many times. This simply hurts my heart greatly. It makes me want to put on an old pair of doc martens and kick a wall.

But follow Newt's guidance. I have a friend who has the big bad...ALS. I know it's not the same thing, but it is the same line of defense. She was early in on her diagnosis and they put her on a trial run. A year later the disease hasn't progressed.

I'm not very poetic or creative so I cant give you an inspiring line of words to make you feel better.

But just wanted to say I am taken aback by your revelation and am truly upset. This just sucks.

I am sending you healing thoughts...actually I don't really even know how to send healing thoughts or what that even means. But fear not, as you know I am a Christian soldier and as such I got on my knees last night and sent up a heartfelt prayer in your honor to the big guy. Of course, any prayers earmarked with your name are promptly sent back (mostly due to your Pope jokes). But after a lengthy discourse with the Lord he assured me that even the most damned of his sheep are worthy of his attention.

And like it or not, I will be sending up prayers each night until you are better.

Hi Matty,My name is Joe, I've some experience in neurological nursing which basically means I can't tell you much more than you've probably already read on the internet.

That said let me assure you that the good christian woman still has a full life-time of debauchery ahead of her, before having to consider reaching for the nembutal......but don't forget the last minute bed side confession, it cleanses the soul and can have the added bonus of scandalizing the family!

Best Of Luck mateGrowler

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“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Matty, I'm tongue-tied. Even so, you are in my thoughts, albeit currently garbled thoughts. I hate that this is happening to you. I read this yesterday and after doing some online research, I just couldn't respond. I'm sending you positive energy and hopefully, some calmness too. I'll do my best.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Matty -This sucks big time -As you have so often said - "I will keep you in my daily anxieties."

The very best I can do is to let you know that you are in my thoughts and I am sending lots of healing energy your way (it may take a bit to get from the US to Austrialia - but rest assured that it is on its way, and once the first dose hits, the other doses will keep arriving continously).

One thing I know about you - is that you are not going down without a fight - and I think that your energies in politics and in being a welcoming force (BIG SMILE) here in the forums wil go a long way in keeping this little bugger at bay. You are a survivor (first and foremost).... the bastard part runs way way way way behind the good-hearted Matty (I know you probably hate hearing that, huh?)

But, it's true --- you've sent out tons of positive energy in Matty the Damned style -- so, it should be no problem recapturing some of that energy and focusing on you during this time of uncertainty.

I got you in my thoughts and will keep you in the front of them - exactly where you should be.

I felt the same when first reading this. Not knowing anything about this condition, and still feeling I don't after reading blurbs about it, I'm left not knowing how to channel my sense of concern and worry. Simply saying "this sucks tremendously for you" doesn't seem adequate, but it's about all I can say right now, at least until more is revealed and known by your doctors.

We still haven't achieved world domination yet.. I still want my post as the minister of religenoide. (yeah, I just made that word up, but you know what I mean). I mean who cares what a Christian lady might do, think about what fun we could have with the lot of christianists when you rule the world.

Kidding aside, since you already knew how shaken some of us must be feeling after reading your posts , I won't repeat it... all we can do is hope for the best for and worry with you about this doggone it motor neurone thingie.

Son of a fucking whore. This makes me so deeply sorrowed, Matty. I don't know what you're going to be doing this weekend, but maybe we could try to connect on skype (unless you're not talking right now).

Anything I can do from here. I love you so much.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Matty, I'm very glad you've spoken up. I'd been missing you of late and now I know why you have been quiet. I don't at this moment have anything to say beyond sending you hugs and good wishes and hoping this turns out to be less terrible than it sounds.

Wow, I really hate this, Matty. I say this with affection, but you're far too mean for something like this to keep you down! Seriously, I know you've helped many here (and elsewhere), and I sincerely hope that some of that same 'help' comes back to you.

I'm really sorry to hear about this Matty. But remember... I'm here for you, and so are all the other people who have posted on this thread as well as others are too! You haven't given up on us, and we won't give up on you. Please don't give up on yourself! Send me a PM if you want/need to. *big hug*

How in hell did I miss this thread? Guess I don't check in as often as I should; I did notice your absence lately....but didn't quite link it up in my head.

I have tears rolling down my lipo cheeks as I read this sad news, honey. You know, without saying it, that I love you dearly. You have been there for me, and for so many of us... I wish there was something more I could do or say....but there isn't.

So, I'll simply say, I love you, my friend. I wish you peace, and serenity, in whatever comes your way. You are a fighter, I do know that. I'm in your corner honey.

Love,

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Dearest Mattala...Like Alan I also missed this post but I just wanted you to know how much you have meant to me and how much you have brought to this website as well. I can only hope that your condition will not get too bad and that you can keep on truckin'.

Best wishes from the other side of the planet.

Hugs, Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

Before it gets to the pump stage, there is much you can do, including simpler (oral) early treatment, so insist on a neurology referral << maybe you done this >> and pester your docs to talk about it, if they don't know shit (which is quite likely) there must be someone in the kangaroo eats rabbit continent who does.

The tests and especially the interpretation of the tests to separate PLS from other similar things are complex and need expertise. As does the management. I personally would not be settled on the diagnosis yet, even if broadly speaking PLS is in the ball park. For there is no definitive test, it's an expert guessing game. Get the best you can get from the bow ties.

Your HIV doc needs to talk about it cos HIV can do this and look similar, and the solution (perhaps) may be, erm, AZT (unfortunately). But I do not hold out a short plank off a ship of hope for you to walk. The docs need to do the medicine.

So a hug (( x ))

- matt

Edited for extra verb

'Sup Noot.

You are of course, right.

But frankly this whole thing, it doesn't matter so much.

To the rest of y'all, if you can have a good poo in the morning then things are pretty good.

Matty , condolences about your nan . Its good to see you posting again .

My grandma had a next door nemesis she called old lady Gallman even though old lady Gallman was a decade younger . They made it a point to sit on the porch and discuss they're differences on a daily basis for hours on end .